Is it ok to vent a little bit?

Posted by jdnc2023 @jdnc2023, Oct 21, 2023

2 months ago, my rheumatologist prescribed 100mg hydroxychloroquine and 10 mg prednisone, tapered to 5 mg in the second month.

It turns out that he meant for me to take 300 mg hydroxychloroquine, but whoever transmitted to the pharmacy put 1/2 instead of 1 and 1/2. I found this out at my 2 month followup appointment.
My joints have gotten worse over these two months. It's the second time my prescription has been wrong, and also, I had to become a "Karen" when my first follow up appointment was canceled abruptly.
The doctor is very good, but his support staff apparently sucks.
Thanks for letting me vent!

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@farmgrrl57

Please, make it a point to ask your Dr. about a biologic. It can't hurt to ask! Good Drs. won't mind, and if you wait for him to mention it, you might be waiting a while for no good reason. If there's a reason he didn't start you on one, he can explain. No harm, no foul.

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What is a "good biologic"? I don't know the what "biologic" means in this realm. Thanks!

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@jdnc2023

It could be that he doesn't think my situation is that bad since my rheumatoid factor was negative. He had said that I'd have more joint damage if the RF was positive, since this started over 40 years ago.

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You are lucky to have a doctor who looks at your symptoms over time rather than relying on only bloodwork. I am so pissed at a "rheumatologist" I saw on Monday.

He walks in the room says I've reviewed your chart in detail. He looked at my hands and feet. And said you have 'wear and tear' arthritis because of your age (69) and weight (yes its higher then I'd like).

But, when I pointed out that my orthopedic, GI, GYN, and other issues started when I was 35 and 116#, 19 surgeries ago. And there was no such thing as an EHR back then for him to review "thoroughly".

Right now I am in tears because I'm so fudging MAD! I tried to talk to him rationally, he just kept shaking his head and saying "no". I will tell my hip/ knee guy whose office recommended him what an a-hole he is.

Please don't recommend going to Mayo... they won't take my insurance. No real options for a second opinion because the "group" of rheumatologists here won't let you see anyone else in the group once you've seen one of them.

Saw my elbow/ shoulder surgeon today who says "no wonder you're in pain". You could have a shoulder and elbow replacement because of the joint deterioration and boney overgrowth. Instead, went with cortisone shots.

When did medicine become SO siloed?

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@mskow

You are lucky to have a doctor who looks at your symptoms over time rather than relying on only bloodwork. I am so pissed at a "rheumatologist" I saw on Monday.

He walks in the room says I've reviewed your chart in detail. He looked at my hands and feet. And said you have 'wear and tear' arthritis because of your age (69) and weight (yes its higher then I'd like).

But, when I pointed out that my orthopedic, GI, GYN, and other issues started when I was 35 and 116#, 19 surgeries ago. And there was no such thing as an EHR back then for him to review "thoroughly".

Right now I am in tears because I'm so fudging MAD! I tried to talk to him rationally, he just kept shaking his head and saying "no". I will tell my hip/ knee guy whose office recommended him what an a-hole he is.

Please don't recommend going to Mayo... they won't take my insurance. No real options for a second opinion because the "group" of rheumatologists here won't let you see anyone else in the group once you've seen one of them.

Saw my elbow/ shoulder surgeon today who says "no wonder you're in pain". You could have a shoulder and elbow replacement because of the joint deterioration and boney overgrowth. Instead, went with cortisone shots.

When did medicine become SO siloed?

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God Bless You. I am on my second rheumatologist. The first one simply did not listen and the 2nd one goes by numbers and not symptoms and yes, it is frustrating. There is a shorage in my area of Rheumatologists. The two I have been too sadly cannot think outside the box. If there is another one you can go to in your area, please get another opinion. COVID did a lot to break down our medical profession as we knew it due to mandates, doctors retiring early,nursing shortates, etc., The specialists are overbooked and it's at least a 3 month wait or more to see them. Praying for you and I care.

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@mskow

You are lucky to have a doctor who looks at your symptoms over time rather than relying on only bloodwork. I am so pissed at a "rheumatologist" I saw on Monday.

He walks in the room says I've reviewed your chart in detail. He looked at my hands and feet. And said you have 'wear and tear' arthritis because of your age (69) and weight (yes its higher then I'd like).

But, when I pointed out that my orthopedic, GI, GYN, and other issues started when I was 35 and 116#, 19 surgeries ago. And there was no such thing as an EHR back then for him to review "thoroughly".

Right now I am in tears because I'm so fudging MAD! I tried to talk to him rationally, he just kept shaking his head and saying "no". I will tell my hip/ knee guy whose office recommended him what an a-hole he is.

Please don't recommend going to Mayo... they won't take my insurance. No real options for a second opinion because the "group" of rheumatologists here won't let you see anyone else in the group once you've seen one of them.

Saw my elbow/ shoulder surgeon today who says "no wonder you're in pain". You could have a shoulder and elbow replacement because of the joint deterioration and boney overgrowth. Instead, went with cortisone shots.

When did medicine become SO siloed?

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I have bad knees and was told first I would get shots. Maybe physical therapy. Then when they no longer did any good I would knee replacements. My point is that maybe that's just the protocol. I know this doesn't make your pain any less and I'm sorry for that. I wish you all the best.

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@mskow

You are lucky to have a doctor who looks at your symptoms over time rather than relying on only bloodwork. I am so pissed at a "rheumatologist" I saw on Monday.

He walks in the room says I've reviewed your chart in detail. He looked at my hands and feet. And said you have 'wear and tear' arthritis because of your age (69) and weight (yes its higher then I'd like).

But, when I pointed out that my orthopedic, GI, GYN, and other issues started when I was 35 and 116#, 19 surgeries ago. And there was no such thing as an EHR back then for him to review "thoroughly".

Right now I am in tears because I'm so fudging MAD! I tried to talk to him rationally, he just kept shaking his head and saying "no". I will tell my hip/ knee guy whose office recommended him what an a-hole he is.

Please don't recommend going to Mayo... they won't take my insurance. No real options for a second opinion because the "group" of rheumatologists here won't let you see anyone else in the group once you've seen one of them.

Saw my elbow/ shoulder surgeon today who says "no wonder you're in pain". You could have a shoulder and elbow replacement because of the joint deterioration and boney overgrowth. Instead, went with cortisone shots.

When did medicine become SO siloed?

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It is so frustrating to deal with the system. I got tired of it many years ago and have avoided doctors as much as possible. I was 22 when my hand joints started giving me problems. The RF test was negative and I got brushed off. Now I'm 64 and diagnosed. It's pretty much too late to help now, because erosive osteoarthritis is basically untreatable, and the rheumatoid has done extensive damage already. 🙄

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Vent all you want! We all need support!

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Hi, ALL medical since Covid began, has been on a downward spiral. Yes, we are all sick of hearing that as the constant reason. I’ll be recognized here by many as my journey began after ACDF 3 fusion cervical spine surgery in June 2020. I refused after a year of treatment to get a total colectomy. My bowels never woke up after surgery.
I have seen many many different skilled specialists and not one wants to dive into why my bowels never woke after surgery. What are they afraid of. It’s not about pointing the finger at anyone. It’s about ME and finding the route cause if their could be one. My surgery was supposed to be in Boston as were by specialists. It was test after test and drug after drug. Here I am 3+ years later still relying on laxatives and if anyone followed my background I’ve tried it all.
Recently moved to Georgia and first appointment Gastro. I walk in, she said I’ve read over 200 pages about you from various doctors. I could tell she actually did. I asked about dietician because I’m so tired of my diet and possibly Neurology to maybe consider it to be nerve related or anything else. She said I’d like for you to try this new drug for severe motility disorders and we’ll see in other in 6 months. I am so tired of it, I said nothing and left. I wasn’t even disappointed because I was expecting it.
That was early September. No,the med has done nothing and I said a dietician is not covered under Medicare but I want one and I’ll pay for it. Finally, in December. I think it will help to maybe make me get energy if I fuel property. I run on empty. So, in conclusion, doctors are seeing to many patients, office staff I’ve encounter has been the worse and it’s simple to fax over meds and move on to their next appointment. This woman didn’t even examine me to possibly come up with her own opinion. I’m searching out someone else.
It is meds, meds, and more meds and no timer to get to route of problem.
Wish everyone all the luck.

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@mothermary1

Hi, ALL medical since Covid began, has been on a downward spiral. Yes, we are all sick of hearing that as the constant reason. I’ll be recognized here by many as my journey began after ACDF 3 fusion cervical spine surgery in June 2020. I refused after a year of treatment to get a total colectomy. My bowels never woke up after surgery.
I have seen many many different skilled specialists and not one wants to dive into why my bowels never woke after surgery. What are they afraid of. It’s not about pointing the finger at anyone. It’s about ME and finding the route cause if their could be one. My surgery was supposed to be in Boston as were by specialists. It was test after test and drug after drug. Here I am 3+ years later still relying on laxatives and if anyone followed my background I’ve tried it all.
Recently moved to Georgia and first appointment Gastro. I walk in, she said I’ve read over 200 pages about you from various doctors. I could tell she actually did. I asked about dietician because I’m so tired of my diet and possibly Neurology to maybe consider it to be nerve related or anything else. She said I’d like for you to try this new drug for severe motility disorders and we’ll see in other in 6 months. I am so tired of it, I said nothing and left. I wasn’t even disappointed because I was expecting it.
That was early September. No,the med has done nothing and I said a dietician is not covered under Medicare but I want one and I’ll pay for it. Finally, in December. I think it will help to maybe make me get energy if I fuel property. I run on empty. So, in conclusion, doctors are seeing to many patients, office staff I’ve encounter has been the worse and it’s simple to fax over meds and move on to their next appointment. This woman didn’t even examine me to possibly come up with her own opinion. I’m searching out someone else.
It is meds, meds, and more meds and no timer to get to route of problem.
Wish everyone all the luck.

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I recommend taking a written (on paper) list of all medications you’ve been prescribed to your local PHARMACIST. Ask about drug interactions and side effects

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@strongevergreen

I recommend taking a written (on paper) list of all medications you’ve been prescribed to your local PHARMACIST. Ask about drug interactions and side effects

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If you’re comfortable using internet, go to drugs.com. You put in your meds and it will bring up side effects and interactions among your drugs both prescription and OTC.

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@nanilynn

If you’re comfortable using internet, go to drugs.com. You put in your meds and it will bring up side effects and interactions among your drugs both prescription and OTC.

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Pharmacists will also ask relevant questions, which “Internet responses” won’t do. Questions like “Do you have a cup of coffee after dinner ? If you eliminate that cup of coffee, you might not need a sedative to help you sleep.”

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